Tuesday, 31 January 2012

Being a Patient Patient...

Well it is now day 5 of my stay at the Brompton. I don't really have anything much else to report at this stage, I'm still on an increased dose of steroids and using my Non Invasive Ventilator at night and during the day for a few hours. I do feel much better than when I was first admitted, but I've still got quite a way to go yet. I can now move around more easily and can stand up whilst getting dressed, which I was really struggling with last week, but I'm not back up to my 'norm'. Oh, and I can actually breathe whilst I eat now, so I think I am actually starting to regain some of the weight I have lost! I have to use a full face oxygen mask when I go for my daily walk with the physio. It's a little annoying, but my oxygen sats drop too low if I walk just using nasal specs. Hopefully this will improve as my lungs get over this infection. I do feel really frustrated because I have got a large amount of stubborn mucous stuck down in my chest and I just want it out!! I am having 2 intensive physio sessions with the physios and Luke helps me to complete an evening session. Finally, my blood sugar levels are now completely out of control, mainly due to the higher dose of steroids I am now taking and also due to the infection itself. So I am now using insulin, which is taking a lot of tweaking! However, I do feel quite relieved that I will gain some really firm control over my blood sugars and don't have to worry so much about what I eat. This will undoubtably help me to gain weight, which is always a good thing! (on admission my weight had dropped to 45.8kg, so I need to get that back up!) Controlling my CF related diabetes with oral tablets for 2 years is pretty good going really. I hoped haven't sounded too negative in this blog, I'm just feeling quite frustrated and anxious to get better and (hopefully) back to my level of 'normal'. I know that things aren't going to simply improve overnight, so I need to just sit back, relax and try to be a patient patient! My friend Ruth messaged me this bible reference; 'do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God' Philippians 4 v 6. This verse has always been helpful to me, but is definitely more so during times like these!


  1. As I was reading your blog Sam and saw Ruthie's verse a song came to me for you.

    Over all the earth(Lord reign in me) by Brenton Brown...songs of fellowship

    Over all the earth you reign on high,
    every mountain stream every sunset sky.
    But my one request, Lord my only aim,
    is that you reign in me again.
    Lord reign in me, reign in your power.
    Over all my dreams,
    in my darkest hour.
    You are the Lord of all I am,
    so won't you reign in me again.

    Anne(James Newton's Mum)

  2. Always inspiring! I can't imagine having to go through something like you are going through. I think if anyone has the right to be negative about their situation it's you - yet you are far more upbeat than I am about stupid little things like traffic and weather! I am taking your post as a sort of kick up the backside to sort my attitude out.

    By the way, don't you think it's a shame you can't have flavoured oxygen? Imagine breathing chocolate all the time!!